Tango of hope: racing against disease

Natalia was born and lives in Vladivostok all her life – 40 years. The last four years – with a diagnosis of ALS (amyotrophic lateral sclerosis). This rare disease gradually takes away motor skills from a person: it makes it impossible to walk, control hands, and then swallow and breathe. This happens at different rates for everyone, and it is impossible to say for sure what affects the dynamics of the disease.

We met Natalia at the V International Festival INCLUSIVE DANCE. It involves people with different types of disabilities, and their partners are volunteers, professional dancers.

Natasha moves in a wheelchair, hardly feels her right hand and speaks with great difficulty – slowly, swallowing syllables and making pauses. But all this did not prevent her from flying to Moscow on her own – to perform at a sports ballroom dancing competition. In a duet with Oleg Nazarov, her dance club partner Oleg Nazarov, she not only performed brilliantly, but also won first place, proving to herself and others that a diagnosis is not an obstacle to new sensations and achievements. But even if there is an obstacle, then … For a strong-willed and reckless person, overcoming it becomes a new goal. And Natasha, as I understand it, is exactly like that – strong-willed and reckless.

From the age of five, she was engaged in figure skating, then fencing, and became a master of sports. After graduating from the Institute of Physical Education, she worked as a coach, led physical education at a medical college, and happily married. A year later, she fell off a moped and was injured. The doctors said it was a sprain. Later, all in the same 2012, it turned out that she had two fractures. Natasha walked on crutches and stubbornly treated her leg, even went to China: they put needles there, did a massage, but there was no effect. Only two years later, when the hands began to “switch off”, the doctors started talking about ALS. It was then that the wrestling character awakened in Natalya – by all means to win, to overtake the disease. “I understand that she still catches up, and somewhere she overtakes,” Natasha explains. But I have to get ahead of her. What am I doing for this? Working. I dance. I am raising a child.”

How does she manage all this?

Psychologies:Is it scary to perform on the floor, in front of the public?

Natalia Borovaya: When we just dance – no, but it’s scary to participate in the competition. Our rivals were not only wheelchair users diagnosed with ALS and cerebral palsy, but also people with other health limitations: hearing impaired, visually impaired, autistic. And it so happened that I was physically the weakest participant. For example, when you need to make a move up, everyone can raise their hands, but I can’t. And it’s hard to keep your back. But all the same, when you find yourself on the floor, your back straightens by itself and a smile appears. And this is just the most difficult thing – to sincerely smile during the entire performance. Not just put on a smile, but show that you enjoy it.

Do dance moves cause you pain or discomfort?

I don’t feel pain during the performance, and then yes – there are cramps and discomfort. Remember how in the “Office Romance” the secretary Verochka says to Mymra: “Everything is in yourself!” So it is here: we must fully assemble. The muscles of the neck and back quickly get tired of a lot of tension. But I never wanted to quit! These are all challenges that can be overcome.

How did you decide to dance?

A year ago, the Opportunities Without Borders project was launched in Vladivostok: thanks to it, people with disabilities can go in for swimming, basketball, painting, music, and even driving a car. And I was offered to participate in the dance project “Movement without Borders”. I agreed with great joy. For me, it was a gamble: I decided to take my body “on a weak basis” – whether it will cope or not. In addition, dance is part of the rehabilitation program, because all the joints and muscles are being worked out here. Of course, there is no need to talk about improvement. In my case, the dance allows you not to lose the last. For me, this is life, a source of positive emotions.

What dances do you already know?

The first was tango. Perhaps it is closest to my character. After all, I am a lion according to the horoscope, and there is something fiery, fiery in tango. Then they learned other sports ballroom dances. In the summer, my partner Oleg Nazarov and I won a regional competition in Vladivostok and immediately began to prepare for international competitions. Four numbers were brought to Moscow at once: waltz, tango, foxtrot, quickstep. The last dance is very fast, energetic, with sharp turns, it is especially difficult to keep your back and arms there.

Difficulty learning movements?

Not really: after all, I was engaged in figure skating as a child, and those skills were very useful. It was more difficult to establish interaction with a partner. I started dancing in a basketball wheelchair. It is heavy, with a metal arc. The arc protects against collision, but creates a distance with a partner. And close contact in the dance is simply necessary, because we must control the stroller together.

At first, Oleg raised my hands hesitantly, with apprehension, because he did not understand what I was feeling, how painful or uncomfortable it was for me. Then we kind of got used to each other. Fortunately, we are similar – both stubborn. If we set a goal, then we must reach the end. And we went to Moscow only to win.

When our coach, the winner of all-Union competitions Yuri Dmitrievich Ustalu, applied for participation, we began to train purposefully every day, sometimes for 6 hours. We rehearse in the morning, then I go to work, then we practice again. After such a load, there were no forces. But as a result, they received the Grand Prix! I am very pleased that the members of the international jury paid attention to us. The President of the International Wheelchair Dance Foundation from the Netherlands, Corrie van Hagten, and the judge from the UK, Raymond Bulpitt, came up to us after the awards and gave Oleg and me several valuable lessons – and this is more important than any praise!

Were the other members allies or rivals for you?

Probably still allies, because we are all united by the love of life. The atmosphere was very friendly, we talked a lot and with pleasure. And most importantly – on an equal footing. None of the participants and spectators with a normal health status perceived us as sick and did not feel pity for us, for me this is the most important thing. All contestants were treated equally.

Does the feeling of pity irritate you?

Of course, I’m a living person. Pity humiliates. In my opinion, it is better to remain silent than to stand and roar over a person. And this kind of thing happens. I always say: “You can’t cry! We are ordinary people.” Of course, any person wants love, tenderness. And I, too, sometimes want to be pitied. But not because of illness, but as an ordinary person.

Who pities you?

Husband, of course. I don’t have a nurse, Maxim and I can handle it ourselves. We wake up together, he helps me wash, get dressed, put myself in order. Then we have breakfast, first he leaves, then I leave for the office. Now I work as a methodologist at the Far Eastern Institute, at the Center for Retraining for Distance Learning – I create curricula, control the execution of assignments. In the evening we do housework together.

Did you have a fear that your husband would leave after learning about the diagnosis?

No. I have always felt his love. Maxim loves everything I do. He says that he loves me in any form and condition. We signed and got married a year before my fall from a moped. And all the stages of the disease passed together. In 2015 my mother died. She and I were very close. After her death, Maxim changed a lot – he became more responsible, caring. If earlier he could, for example, lift me up and put me down at random, rather casually, now he began to listen more carefully to what I need, how I feel better.

Of course, we both can break loose, quarrel. I am more emotional – if something goes wrong, I can slam the door or throw something. Let’s shout, well, calm down on this. Maxim is my main support. And great-nephew Igor is the main motivator. Igor has parents, but the circumstances were such that Maxim and I took him to be raised. Then he was 4 years old, and now 9, he is in the third grade. We are thinking of formalizing custody. I help him prepare lessons, we study together, read books.

Do you talk to him about your illness?

It is very difficult to explain to a child what ALS is. Of course, I told him about the illness when I could speak well, but due to his age he did not accept this information. Sometimes he even forgets that I am a sick person. He comes from school, calls me: can we have guests, girls from school? If my condition is good, I always allow. He gives everyone tea, treats – he does everything himself. And if I feel really bad, I have to refuse. But he still does not understand how hard it is for me. It wasn’t until the speech was over that he really got scared. And I can understand why. All these years we lived together – Maxim and I, Igor and my mother, his great-grandmother. And then my grandmother died, and now I’m sick, and he says: “Anything, just don’t leave.” He is going through all this very hard. But I promised that I would bring him to the 11th grade. No matter what.

Has your character changed during this time?

No, except that I became more stubborn. I do not accept my illness and weakness. This is my rival, smart and cunning. But I will do my best to overtake him. The dance competition showed that I can work, I can please. And I have the strength and desire to go further – to the next international competitions. I am ready to go abroad for the competition. What is a four-hour flight to Korea after an eight-hour flight to Moscow? Sheer nonsense. I am glad that I do not sit at home by the window and do not watch how others live, but I live by myself. And I can satisfy my ambitions.

How not to forget about your ambitions when you learn about a serious illness?

Her attitude is very much influenced by her attitude. I believe that. Do you know why with our illness they quickly go to the next world? Because they lose interest in life and in themselves. It seems to me that you need to fight, no matter what stage you are at – walking on your own or already lying in bed. Even in a motionless state, you can fight. And there are those who just received a diagnosis and immediately wilted. They think, “Why should I try if I’m still lying down?” Or even worse: “Why should I do all this if I’m going to die soon anyway?”

What does mood depend on?

Probably from character. Or from the fact that there are too many around those who push and push you: “necessary”, “necessary”, do exercises, do massage. Such coercion, oddly enough, can cause rejection. And a person out of a sense of protest refuses to do all this, although he understands that he is harming himself. Overprotection gets in the way. I understand this well, because I myself am too independent and not ready to accept any help: only when I understand that I can’t cope on my own, that it’s difficult for me. And if everything is fine – why?

Do you have a dream?

Dream? A dream is something unreal, but a goal is real. Get well. This is what my goal is.